Home > Data Sharing Agreement for the Registry Hub for Rare Neuromuscular Diseases

Data Sharing Agreement for the Registry Hub for Rare Neuromuscular Diseases

Registry Documentation

Title/Link	Version Number	Link
Original DSA		removed – do not use
Data Sharing Agreement – Amendment 2	Ref APHP 2021-578 /02	Read it here
DSA Appendices
Appendix 1: Joint Controllership (editable Word doc)	Ref. APHP 2021-578/02	Open it here
Appendix 2
Appendix 3: Informed Consent (editable Word doc)	Ref. APHP 2021-578/02	Open it here
Appendix 4: Data Security Policy		Read it here
Appendix 5: Governance		Read it here
Appendix 6: Data Access Policy		Read it here
Appendix 7: Publication and Authorship Policy		Read it here
Appendix 8: Acession of a new party to the EURO-NMD registry Data Sharing Agreement (editable Word doc)		Open it here